ACDDAdvocate A L A B A M A C O U N C I L O N D E V E LO P M E N TA L D I S A B I L I T I E S
Volume VII Number 3, Fall 2012
Autism Awareness and Acceptance in ALABAMA
The Federal Definition
Developmental Disability d A. The term “developmental disability” means a severe, chronic disability of an individual that is:
• attributable to a mental and/or physical impairment
• is manifested before the individual attains age 22
• is likely to continue indefinitely
• results in substantial functional limitations in 3 or more of the following
areas of major life activity:
(1) self-care (2) receptive and expressive language
(6) capacity for independent living
(7) economic self-sufficiency
• reflects the individual’s need for a combination and sequence of special, interdisciplinary, or
generic services, individualized supports, or other forms of assistance that are of lifelong or ex
tended duration and are individually planned and coordinated.
B. Infants and young children:
An individual from birth to age 9, inclusive, who has a substantial developmental delay or specific
congenital or acquired condition, may be considered to have a developmental disability without meeting 3 or more of the criteria (listed above) ... if the individual, without services and supports, has a high probability of meeting those criteria later in life.
From the Developmental Disabilities Assistance and Bill of Rights Act, 2000 Reauthorization, Public Law 106-402, S. 1809-7(8).
Alabama Council 0n Developmental Disabilities
ACDDAdvocate Vol. VII, No. 3 Fall 2012 The ACDD Advocate is published quarterly by the Alabama Council on Developmental Disabilities.
COUNCIL OFFICE: RSA Union Building 100 North Union Street P.O. Box 301410 Montgomery, AL 36130-1410 (334) 242-3973 or 1(800) 232-2158 FAX: (334) 242-0797 Website: www.acdd.org
AUTISM AWARENESS & ACCEPTANCE
in Alabama 5
Bluff Park Promise Home
Church builds residential facility for adults on autism spectrum.
Faith community in Alabama reaches out to include people with disabilities.
Autism Society of Alabama
Senator Cam Ward
Veterans, Students Collaborate
(ASA) works to improve services for persons with Autism Spectrum Disorder through education and advocacy.
State senator continues to work for treatment and insurance reform for Alabama families affected by disabilities.
Partnership to develop customized assistive-technology for veterans with disabilities.
Dr. Dave Martin, Chair, Parent Advocate Peggy Givhan, Department of Senior Services (Designee) Johnna Breland, Parent Advocate Ruth Brewbaker, Parent Advocate Vivian Brown, Self Advocate Sue Berry, Department of Human Resources (Designee) DaLee Chambers, ALSDE – Special Education (Designee) Michael Collins, Self Advocate Wendy Dean, Self Advocate Karen Driver, Parent Advocate Stefan Eisen, Vice Chair, Parent Advocate Joe Eversole, Self Advocate Amy Floyd, Department of Children’s Affairs (Designee) Mitchell Garrett, Epilepsy Foundation Ellen Gillespie, Alabama Disabilities Advocacy Program Carolyn Greene, Parent Advocate Reginald Guilford, Self Advocate Linda Hames, Rehabilitation Services (Designee) April Ikner, Self Advocate Charlie Jordan, Parent Advocate Acquanetta Knight, Department of Mental Health (Designee) Walden Lechner, Self Advocate Jacquline Harris, Department of Public Health (Designee) David Lowry, Self Advocate Angela Jones McNeal, Parent Advocate Frances Murphy, Family Member Latonda Cunningham, Alabama Medicaid Agency (Designee) Gaylen S. Pugh, Local Agency Nancy Rhodes, Parent Advocate Sylvia Richey, Self Advocate Graham Sisson, Governor’s Office on Disability Shelia Smalley, Family Member Joan Smith, Self Advocate Scott Sligh, Parent Advocate Cindy Sweeny, Center for Excellence (Designee)
Elmyra Jones, Executive Director Sophia D. Whitted, Fiscal Manager COUNCIL MEMBERS:
S L DI
ACDD Mission Statement To promote and support independence, advocacy, productivity and inclusion for Alabamians with developmental disabilities.
Contents Letter from the Governor................................... 2 Letter from the Council Chair........................... 3 Letter from the Executive Director.................. 4 Bluff Park Promise Home................................... 5 Special Connections.......................................... 8 Barbara Newman Leads Conference............. 10
George Neal Becomes an Advocate................12 Alabama Autism Society.................................. 14 Senator Cam Ward Continues Advocacy....... 16 Braswell and Assistive Technology................ 18 Housing Market Evolves..................................22 Veterans, Students Collaborate......................25
Cover photo of RSA Tower in downtown Mobile, with special blue lighting for Autism Awareness Month, by Edward Fieder. DISCLAIMER: All direct quotations and other information represented through interviews in this magazine are the opinions of the speakers, and do not necessarily represent the position of the Alabama Council on Developmental Disabilities or the Alabama Department of Mental Health.
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Governor State of Alabama Greetings In my most recent letter in the ACDD Advocate, I emphasized the importance of housing, noting that “no matter where we are in life, we all need a place to live. For many of our most vulnerable citizens, safe, affordable housing is a major challenge.” I was writing in reference to the Council’s very successful and inclusive collaborative housing
database project entitled ALHousingSearch.org. In this issue we continue to see the many ways that caring and concerned Alabamians reach out to help their neighbors, including the most vulnerable among us. Bluff Park United Methodist Church, along with its senior minister Reid Crotty, have long been beacons of inspiration and hope to thousands of worshippers in Hoover. With visionary leadership, generous financial donations, and lots of volunteer labor, Bluff Park has recently completed and dedicated Bluff Park Promise Home, a residential facility on the church grounds that will be a permanent home to six adults with disabilities. These residents will be welcomed as part of Bluff Park’s church community and will live rich, independent lives in the beautiful facility. Bluff Park Promise Home will be operated by Glenwood, a nationally-recognized model for treatment of people with behavior disorders. I have always known that Alabama and her people were caring, creative, generous, and enterprising. Bluff Park Promise Home is a sterling example of what can happen when people come together and figure out how best to use resources to reach out to those in need. I am very pleased that our churches continue to show us how best to include all of our citizens in our daily life and work. In addition to Bluff Park, we are also able to read in this issue about Briarwood Presbyterian’s Special Connections ministry and its wonderful outreach efforts. These examples are just two among many going on all around us that emphasize people’s abilities rather than their disabilities. I want to encourage each of us to continue to work for a better Alabama, and in doing so to think of ways to include all of our citizens in every part of our society.
D e v e l o p m e n ta l D i s a b i l i t i e s
Council Chair Dave Martin, Council Chair
Alabama Council on Developmental Disabilities It has been 43 years since the federal lawsuit Wyatt v. Stickney was filed on behalf of 16-year-old Ricky Wyatt. Wyatt, who died just last year, was a young man without a mental health diagnosis of any sort, who was basically incarcerated at Bryce Hospital in Tuscaloosa. The landmark ruling in federal judge Frank Johnson’s Montgomery courtroom established certain minimum treatment requirements for people who were institutionalized in Bryce and Partlow Hospitals in Alabama. By extension, this federal law affected all 50 states, and placed Alabama in the forefront of what has become an entire movement away from institutionalization and toward community living. This movement has not always been fast, or smooth, or pretty, but for the people who were living in what Judge Johnson famously called “warehouse conditions,” moving into the community was a Godsend. The Alabama Council on Developmental Disabilities promotes and supports the independence and inclusion of Alabamians with developmental disabilities, and both the Departments of Mental Health and Rehabilitation are focused on very similar, consumer-driven goals. When the lawsuit was filed on October 23, 1970, the far-reaching results that we see today were largely unimaginable. So how do these historical results relate to this issue of the ACDD Advocate? The goal is still to have an independent life as opposed to one of dependence and institutionalization. The goal is still personal freedom in the community, and in this issue we read about something that is making these ideals possible in bold new ways: assistive technology and universal design. The inter-related stories in this issue showcase the ways builders and engineers and teachers and researchers are working closely with people with disabilities to make life more inclusive and open for everyone. From the way we design new construction or retro-fit older homes, to the computer and wireless devices that operate our living environments, to the innovations we can forge for individual situations – including those for the military veterans featured here – we can see that AT and UD are the natural evolution of what it means to be living independently, and living in the community. I can’t say where we will be in another 40 years, but it’s rewarding to see how far we have come and how fast these innovations are moving us forward. AT and UT are making it possible for more and more of our citizens to be included in the home, in the workplace, and in the community at large. These technologies give us all another way to do what we should all be doing: seeing people’s abilities rather than their disabilities.
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A L A B A M A
C O U N C I L
D E V E L O P M E N TA L
D I S A B I L I T I E S
A Letter from the
Executive Director Elmyra Jones, Executive Director
Alabama Council on Developmental Disabilities One of the best parts of my work as Executive Director of the Council is seeing the many great projects that we fund through our grant-making process. Over the years I have seen the difference these successful collaborations have made in individual lives and in the lives of entire communities. On the other hand, as I work with our families and stakeholders I still see that there is too much stigma and too much prejudice – usually based on fear and ignorance – toward our citizens with disabilities. Things have gotten much better over the years, of course, but this is still a battle that families and individuals are fighting every day. On June 2, President Obama hosted a conference that explored insurance coverage for mental health care and substance abuse, the importance of recognizing the signs of mental illness in young people, and improved access to services for veterans. The overall goal of the conference was to reduce the stigma of these disabilities and to encourage those who are struggling to get help. This in itself speaks to the progress we have made as a society. I like seeing things like this on a national level, but I also enjoy seeing what our people are doing right here in Alabama to ensure that we are focusing on people’s abilities rather than their disabilities. In this issue of the ACDD Advocate we are pleased to showcase efforts by two Birmingham-area churches that are doing just that. Briarwood Presbyterian’s Special Connections ministry has a wide-ranging program of inclusion for people with disabilities as part of its church life, with a special focus on including children. The church recently held a conference to share its ideas and successes with other churches from across the state. The conference was led by nationally-renowned church and school consultant Barbara Newman. It’s like a ripple effect when these groups come together and then take what they have learned back to their home church and community. Likewise, Bluff Park United Methodist Church dedicated its Promise Home residential facility on the same day President Obama was holding his White House conference. The home for six adults on the autism spectrum is located on the church property, and the residents are included in everything the church does, from worship to concerts to social events. Getting to know people for who they are – seeing their abilities instead of their disabilities – is the best way to overcome the fear and ignorance that leads to stigma in the first place. It’s a slow process, but it’s good to see progress being made on both a national and local level. Thanks to our Council members who are part of the good fight every day.
D e v e l o p m e n ta l D i s a b i l i t i e s
‘We knew it would be a blessing to many people for years to come’
Bluff Park Promise Home a project of Glenwood, Inc.
“We looked at ways to do something similar to this luff Park Promise Home, a residential fawith other organizations and for various reasons cility for six adults with disabilities, was they just did not work out. But our church memdedicated June 9 on the campus of Bluff Park United Methodist Church in “...our church members raised the money and we had Hoover. The facility, which church lots of volunteer labor and building skills under the member Bill Pearson said “will be a blessing to many people for years to capable leadership of Bradley Word, so what we really come,” has been a long time in the needed was to find the right group to operate the home. making. The church wanted to provide this sort of ministry, but “The idea of some sort of group at the same time we did not to own or manage the home.” home has been around for a while since we had some nice space on bers raised the money and we had lots of volunour church campus that wasn’t being used,” said teer labor and building skills under the capable Bluff Park’s retiring senior minister Reid Crotty.
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“It was extremely positive,” Crotty recalls. “Our members talked about the importance of welcoming the residents as part of our church family. We have music programs and all sorts of activities. We can have a birthday party for a resident. We can do so many things. While we don’t want to force the residents to join us in our activities, we welcome them in all that we do, including our three Sunday services.” Bluff Park United Methodist Church has about 2,000 members, and is a popular site for music concerts because of the sanctuary’s excellent acoustics.
Glenwood a perfect fit leadership of Bradley Word, so what we really needed was to find the right group to operate the home. The church wanted to provide this sort of ministry,
“We of course knew about Glenwood Autism and Behavioral Health Center, and we sought their advice on how to proceed,” said church member Pearson, who is also involved in the lead-
“We of course knew about Glenwood Autism and Behavioral Health Center, and we sought their advice on how to proceed,” said church member Pearson, who is also involved in the leadership of the Alabama Autism Society. “To make a long story short, it became increasingly obvious that the best possible group to operate the home was Glenwood.” but at the same time we did not want to own or manage the home.” As a first big step, the church created an independent, separate board called Bluff Park United Methodist Community Ministries Foundation and donated the property to the Foundation. The board then began its search for the right management fit and finally found it right here in Birmingham.
ership of the Alabama Autism Society. “To make a long story short, it became increasingly obvious that the best possible group to operate the home was Glenwood.” Crotty said when the board recommended that the facility be operated by Glenwood, the church held meetings to gather input and feedback from its members.
Alabama Council 0n Developmental Disabilities
“This was a great opportunity for us,” said Lee Yount, President and CEO of Glenwood. “We had talked to the church about their hopes for the property and when we were invited to see it for ourselves we just realized this was an incredible opportunity for us and for many, many people in the years to come. Really this home is a great gift to Birmingham’s disability community. It is a unique opportunity for us. We’ve never had anything like this come our way before.” “We have very well-planned residential facilities on our Glenwood campus. But when we go into neighborhoods to establish a group home, accessibility and technology are often real problems, especially in older homes. This home is very well constructed and planned perfectly for residents with autism or other disabilities. Plus, it has a definite ‘welcoming’ feeling from the church.”
Joe Carter, Glenwood’s Vice president of Adult Services, agreed. “There are always challenges when you go into a neighborhood to open a group home or an apartment building. But Bluff Park is a welcoming place. Here there is a large community ready to embrace the residents, and that in itself is a unique and wonderful gift.” Glenwood will operate the 4,000-square foot, six-bedroom, sixbath home, with a 24-hour onsite manager. In addition to the large private rooms, there is also a delightfully large sun room near the back of the house, and a screen porch that sweeps across the entire rear of the home. The home was also completed with suggestions from Glenwood based on its own residential experiences. The home includes sound-insulated walls, hardwood floors as opposed to carpet, lever-action door hardware, adaptable showers, and a variety of safety and comfort features.
“We know that other churches somewhere out there have property that they are not using but want to put to good use. If you have an acre of property, use it for the greater good! Of course, we were especially fortunate to find Glenwood, since they are the nationally-recognized experts in this exact area. But we hope this can become a model program. It’s a new venture for us and we are very excited about how it can help our church members learn and grow, as well as the many lives the home will enrich as the years go on.”
A model program for other churches “Glenwood is a perfect partner for this excellent venture,” Pearson said. “We hope that Promise Home can be a model program for other areas or other churches.” Crotty agreed that the project could become a model for other churches. “We know that other churches somewhere out there have property that they are not using but want to put to good use. If you have an acre of property, use it for the greater good! Of course, we were especially fortunate to find Glenwood, since they are the nationally-recognized experts in this exact area. But we hope this can become a model program. It’s a new venture for us and we are very excited about how it can help our church members learn and grow, as well as the many lives the home will enrich as the years go on.”
The home was also completed with suggestions from Glenwood based on its own residential experiences. The home includes, sound-insulated walls, hardwood floors as opposed to carpet, lever-action door hardware, adaptable showers, and a variety of safety and comfort features.
In addition to the large private rooms, there is also a delightfully large sun room near the back of the house, and a screen porch that sweeps across the entire rear of the home. T h e A C D D A d v o cat e
Special Connections Briarwood Presbyterian Church
ministry seeks inclusive worship and play
he Alabama Council on Developmental Disabilities believes that all Alabamians – including those with disabilities – should be included in every aspect of life in the greater community. To that end, the ACDD Advocate has written several times over the past few years about the many ways faith communities in Alabama reach out to include people with disabilities. Briarwood June Cork and other conference attendees welcome Barbara Newman to Birmingham Presbyterian Church in Birmingham has been an exemplary leader in this regard, espeLast month, Special Connections people with disabilities and their famicially through its Special Connections held a unique training session entitled lies as is shown for others.” ministry. Joel Wallace was the founding “God’s Amazing Spectrum: Including To translate that philosophy into director of this ministry and his good ALL Children and Youth in our Comaction, Special Conmunities.” Approximately three dozen nections ministers, in “Special Connections is a ministry to participants turned out from several both word and deed, people of all abilities. Our desire is to area and regional churches to hear both to and alongside see society and the Body of Christ show Barb Newman deliver the inspirational people touched by equal concern for people with disabilities and informational program. (See relatdisability and works and their families as is shown for others.” to include them and ed story on the conference in this issue.) “The conference went very well,” their families in the Cork said. “We are especially pleased life of the church and the community. work led him to a similar position on that representatives came from so Although Special Connections is based a national scale for the Presbyterian many churches since that it is a real from Briarwood Presbyterian Church Church North America. The ministry is opportunity to spread this important (PCA) in Birmingham, people involved now directed by June Cork. message of inclusion.” in this ministry are from many different According to Cork, “Special Connec“The purpose of the conference of churches, denominations, religions or tions is a ministry to people of all abilicourse was to help church leaders learn have no religious affiliation. All opporties. Our desire is to see society and the more and better ways to include everytunities are open to everyone in the Body of Christ show equal concern for one in their worship services and in the community. 8
Alabama Council 0n Developmental Disabilities
larger community. That is our particular focus in Special Connections where we have several ways that we try to do just that.” “The conference was open to anyone, not just for church leaders or Sunday School teachers. The way Barb presents it is for everyone to ask questions like this: ‘What is my role, and how can I include a person with special needs in our church community?’ We want our children and youth and adults to be embraced by the church instead of being compartmentalized. We believe that everyone is part of the body, and that everyone is created in God’s image. We all have our strengths and weaknesses and we all look the same in that respect. So people with special needs or disabilities should not be set aside. We need to include their gifts as part of the larger body. At Briarwood and many other churches that I know about, we try to look at ability instead of disability. We all have skills. We have one child here who is a great artist, and a young adult who can sing all the verses of hundreds of hymns and praise songs and is a great lover of music -- just a range of talent and abilities as diverse as the individuals themselves. And that was what Barbara came to help us do – find ways to include those talents and those individuals.” Cork said Newman’s presentation was dynamic on many levels. “Barbara was just great,” she said. “Not only is she a wealth of information but when she walks into the room you feel that you’ve known her all your life. She has such wisdom and compassion and such a wonderful diversity of knowledge she wants you to know. She is great. Everyone there was transformed in a positive way.” In addition to sharing its experiences with other churches, Briarwood already has a terrific program of inclusion throughout the year. At Sunday worship services, Briarwood has two rooms – one has older teens and young adults and another room is for younger children. Depend-
ing on the person, the child may be in the worship service until the preaching begins and then they retire to their designated rooms. “For the younger people it’s like a play time, but we also work on social skills,” Cork said. “Nine of our children right now are in a typical Sunday School class with their ‘A Team’ buddies, who are the high school kids who we train to work with the youth. Most of these younger children are on the
For more information on Briarwood’s range of programs, and to find out how you and your family can become involved, visit the Special Connections website at www.briarwood.org/ ministries/specialconnections. You can also contact June Cork directly through this website. autism spectrum but some have Down syndrome as well. For those that aren’t quite ready, our room is a fall back safety net they can always come to. And in both rooms we have praise and worship lessons as well as play and social skills development.” Briarwood also has a mother’s group that enjoys fellowship and time together, respite care, social outings, field trips, family services, as well as its Camp Briarwood for youth and adults. For more information on Briarwood’s range of programs, and to find out how you and your family can become involved, visit the Special Connections website at www.briarwood.org/ministries/special-connections. You can also contact June Cork directly through this website.
“The conference was open to anyone, not just for church leaders or Sunday School teachers. The way Barb presents it is for everyone to ask questions like this: ‘What is my role, and how can I include a person with special needs in our church community?’ We want our children and youth and adults to be embraced by the church instead of being compartmentalized. We believe that everyone is part of the body, and that everyone is created in God’s image. We all have our strengths and weaknesses and we all look the same in that respect. So people with special needs or disabilities should not be set aside. We need to include their gifts as part of the larger body. At Briarwood and many other churches that I know about, we try to look at ability instead of disability. We all have skills. We have one child here who is a great artist, and a young adult who can sing all the verses of hundreds of hymns and praise songs and is a great lover of music -- just a range of talent and abilities as diverse as the individuals themselves. And that was what Barbara came to help us do – find ways to include those talents and those individuals.”
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Barbara Newman leads conference on inclusion at Birmingham’s Briarwood
arbara J Newman is a wellknown church and school consultant associated with the CLC Network (www.clcnetwork.org). She is the author of “Helping Kids Include Kids with Disabilities,” “Autism and Your Church,” and “Body Building: Devotions to Celebrate Inclusive Community,” among several other works and curricula. In addition to writing and speaking, Barb enjoys working in her classroom at Zeeland Christian School. “I grew up in Michigan and did all my schooling there,” Newman said. “I had several sisters who were in education, and I wanted to be different, so in college I chose to major in Special Education pretty much at random. Of course, now I realize that was God’s design for my life.” Newman began her career teaching students with Intellectual Disabilities in both schools and churches and eventually built a relationship with the CLC Network as well as Zeeland School (in Zeeland, Michigan). “We launched the Zeeland School in 1989 to work with children and young people with autism, Down syndrome,
7 The school grew and flourished and drew visitors from around the world. It was a new concept to have inclusive rather than segregated classrooms. “This all had a huge impact on the skill level of teachers in our building as well as on the students themselves,” Newman remembers. “The day we started inclusion it was no longer all about money and cute clothes – the students clamored to sit next to someone with a disability. It’s hard to explain but they became the rock stars. Inclusion just turned our social structure around in a great way.”
and really any physical or intellectual disabilities,” she said. “It was one of the first inclusion programs in the entire country. I based my vision on 1 Corinthians 12:12: Just as a body, though one, has many parts, but all its many parts form one body, so it is with Christ. For we were all baptized by one Spirit so as to form one body. I guess you’d say that since there were not many models of inclusion back then, we just sort of made it up!” The school grew and flourished and drew visitors from around the world. It was a new concept to have inclusive rather than segregated classrooms. “This all had a huge impact on the skill level of teachers in our building as well as on the students themselves,” Newman remembers. “The day we started inclusion it was no longer all about money and cute clothes – the students clamored to sit next to someone with a disability. It’s hard to explain but they became the rock stars. Inclusion just turned our social structure around in a great way.” Newman was at least partially motivated to figure this out because she saw
kids with disabilities essentially getting kicked out of church services. “Because of that, I wanted our best practices from the school to also be in church. There are obviously lots of similarities. My first book on this subject came out in 2001 and I am glad to see that now there are lots of books trending toward including people with autism in church.” “It’s more important now than ever to find churches the tools to say ‘Yes! You are welcome here.’ There were just so many terrible stories I was hearing. Churches said the problem was that they didn’t know how to include everyone. That launched the ideas and the speaking part of my career, so now I’ve been running around country for 20 years spreading this message. But I always continue to manage a classroom or a program in addition to speaking. If I’m not in the classroom I will stop learning.” In her presentation at Briarwood Newman had the room decorated in green and pink. “It’s the puzzle pieces,” she said. “We are all a combination of pink and green. Green is for the areas of gifting, and pink is for our hot spots, or weaknesses. The bad thing is that all too often when we are working with people with disabilities they are seen as all
pink. But that’s not right! God has given gifts to all people in his image, and everyone is a combination of pink and green.” “Just as it says in Corinthians that God has arranged the parts of the body, it’s clear to me that God has arranged our puzzle pieces. That concept is central to me.” Newman said in her work with churches the most common mistake she sees is when they try to start a ministry for two or three distinct members of the congregation. “This is a huge mistake,” she said. “For one thing, it is not a ministry for a person or persons – it needs to be a ministry with people – we are all together, we are with one another.” “Here is the way I see it: if it’s true that God arranged the person and then the church sends the person away I ask – who loses? The answer is that everyone loses. The church loses the gift that individual brings. Our role must be to create spaces of welcome for everyone.”
Newman said in her work with churches the most common mistake she sees is when they try to start a ministry for two or three distinct members of the congregation. “This is a huge mistake,” she said. “For one thing, it is not a ministry for a person or persons – it needs to be a ministry with people – we are all together, we are with one another.” “Here is the way I see it: if it’s true that God arranged the person and then the church sends the person away I ask – who loses? The answer is that everyone loses. The church loses the gift that individual brings. Our role must be to create spaces of welcome for everyone.”
To learn more about Newman’s work, and especially to access the tools she and the CLC Network have developed to help facilitate school and church inclusion that really works, visit the CLC Network website at www.clcnetwork.org T h e A C D D A d v o cat e
From People First to Self-Advocacy Services—
George Neal grows into advocate role
s the Director of the Office of Self-Advocacy Services in Alabama’s Department of Mental Health, George Neal is responsible for providing leadership to individuals with intellectual disabilities to promote being active and participating in governmental and civic activities. Neal came to the Department following his tenure as president of People First of Alabama, another advocacy group for
“It was hard and dirty work removing people with disabilities. Neal is certainclutch covers and pushing out the rivly a role model for self-advocates, yet ets,” Neal recalled. “I had a job coach the role did not come to him naturally. which was a good thing for me. After a “I grew up in Birmingham and gradcouple of years I got a different job in uated from Berry High School in 1987,” a mail room in Irondale, and just kind Neal said. “I never really had a name of moved into different jobs in grocery put to my diagnosis, but I had some stores and retail establishments.” sort of serious learning disability. My A turning point for Neal came when classes were all in what was then called Susan Ellis of the Arc of Shelby County Special Education, and lots of the stuhelped Neal land a job at Baptist Hosdents there called me stupid, retarded, pital in Shelby County, because it was all of that. It was upsetting as I grew up, there that Neal first encountered Peobut as I got older I learned to handle ple First of Alabama. the hecklers.” A huge part of “Being an advocate and a self-advocate really learning matters because if you don’t stick up for to “handle yourself and your peers, you will never get it” came what you need,” Neal stated. “People who from Neal’s cannot speak for themselves have the same mother and grandneeds as everyone else. I know that if I wasn’t mother, an advocate, if I hadn’t had these many great both of opportunities, I’d be sitting at home watching whom TV right now.” taught him through ex“This was in about 2001, when some ample what it meant to be an advocate. of our members went to a state con“I never knew what an advocate was vention and came back and started our until I became one,” Neal said. “But I local chapter,” Neal said. “From that always had a lot of family support. My organization I learned about my rights mother and grandmother were always and really saw people advocating for telling me to stick up for myself. I never me. I became a local vice president but knew until later that my grandmother wanted to become even more involved advocated for me with my mother, convincing her to let me learn to drive a car so I became a board member of the state organization. To my surprise, I and get my license. She told my mom was asked to run for president of the I’d be handicapped if I didn’t learn, and state People First organization in 2004 so she taught me how to drive.” and was elected.” Neal got his drivers’ license in 1988 Neal described the experience as and in March of 1989 got his first job, “overwhelming.” working in supported employment at “That opportunity opened up a Anco Clutch and Brake in Fairfield. whole new world for me,” he said. “I
12 A l a b a m a C o u n c i l 0 n D e v e l o p m e n ta l D i s a b i l i t i e s
“My self-esteem over the past few years has gone from zero to just feeling great about life,” he said. “My work at Anco was hard and dirty but I kept pushing myself with the help of my job coach. I kept on working and moved up and look at me now. I have a great job, I’ve learned to use a computer, and I have a car with a GPS that I have learned to use. I have my own place in Prattville. I love to travel to see and help people around the state. The world is my office.”
George Neal and Scott Renner
kept learning. I went to Washington D.C. and lobbied the Senate staff and told them why the disability movement was so important. While I was serving my second term as president I was able to apply for the job I am in now. When they called and told me I had the job I was in my car. I about drove off the road. I could not believe it! It was the greatest thing that had ever happened to me.” Working under supervisor Byron White, Neal has been visiting with people from Partlow, educating them about the importance of work for self-esteem, and the real power that can come from living on your own and having your own money.
“Being an advocate and a self-advocate really matters because if you don’t stick up for yourself and your peers, you will never get what you need,” Neal stated. “People who cannot speak for themselves have the same needs as everyone else. I know that if I wasn’t an advocate, if I hadn’t had these many great opportunities, I’d be sitting at home watching TV right now.” “My self-esteem over the past few years has gone from zero to just feeling great about life,” he said. “My work at Anco was hard and dirty but I kept pushing myself with the help of my job coach. I kept on working and moved up and look at me now. I have a great
job, I’ve learned to use a computer, and I have a car with a GPS that I have learned to use. I have my own place in Prattville. I love to travel to see and help people around the state. The world is my office.”
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Alabama Autism Society works for improved services, awareness
At a recent event Anna McConnell, Alabama's Autism Coordinator met with the Autism Society of Alabama staff L to R: Autism Coordinator Anna McConnell, Policy and Program Advisor Bama Hager, Community and Program Advisor Angel Loewen, Community and Program Advisor North Alabama Debbie Bumbika, Executive Director Melanie Jones and Fundraising and Events Manager Lauren Reid. Bama Hager and Debbie Bumbika are parents of children who have autism. Bama works part time in the Birmingham office and Debbie works part time in the Huntsville office.
ccording to its mission statement, the Autism Society of Alabama (ASA) works to improve services for persons with Autism Spectrum Disorder
and are resources in dozens of towns and cities for families living with ASD in the area. ASA continually works on statewide awareness activities. ASA collaborates with numerous organizations, state Hager said many Alabama families are financially ruined agencies and service providers to improve the lives by ASD. Families are making decisions about foregoing of Alabama families living basic needs to pay thousands of dollars per month for with ASD. Additionally, recommended ASD therapies. Many families experience ASA coordinates confergreat stress paying for ASD therapies. If parents forego ences for parents, teachtherapy, they experience distress because they feel they are ers and providers, and supports families with not able to provide the therapies prescribed for their child. family camps and family enrichment activities around the state. (ASD) and their families through education Two main areas of focus for ASA efforts are and advocacy. ASA maintains 35 Network continued expansion of insurance coverage Support Group across the state. These Netfor ASD therapy and expansion of adult job work Groups are often led by local parents 14 A l a b a m a C o u n c i l 0 n D e v e l o p m e n t a l D i s a b i l i t i e s
training, job coaching and educational opportunities. According to Bama Hager, ADA Policy Advisor and parent of a 13-year-old son who has autism, insurance reform is greatly needed in Alabama, which is why the organization endorsed last year’s Riley Ward Act, sponsored by State Senator Cam Ward (see related story in this issue). “Although the recommended treatment for ASD usually includes speech therapy, occupational therapy, behavior therapy, and social skills training, minimal therapy is covered by insurance,” Hager said. “Families are often allowed 30 combined speech therapy and occupational therapy sessions during the year. Families often exhaust those 30 sessions in three to six months. The rest of the recommended therapies are paid out of pocket by Alabama families.” Hager said many Alabama families are financially ruined by ASD. Families are making decisions about foregoing basic needs to pay thousands of dollars per month for recommended ASD therapies. Many families experience great stress paying for ASD therapies. If parents forego therapy, they experience distress because they feel they are not able to provide the therapies prescribed for their child. “I hope and expect that private and public insurance will continue to expand coverage for ASD therapies in our state and other states,” Hager said. “ASA will continue to work with families, businesses and government to request expansion of ASD coverage.” Another area of focus for ASA is job training, job coaching and educational opportunities for adults with ASD. The prevalence rate for ASD is 1 in 88 children born in the United States. “Our society should plan for adulthood for thousands of Alabama citizens living with ASD,” Hager concluded. “There are too few job training and job coaching programs for adults with ASD. We need more programs that support adults with ASD in jobs.”
CDC reports increased prevalence of parent-reported autism cases The prevalence of parent-reported cases of autism is significantly higher now than it was just five years ago, according to new data from the Centers for Disease Control and Prevention in Atlanta. From 2011 to 2012, 1 in 50 school-age children had a diagnosed autism spectrum disorder according to their parents – up from 1 in 86 in 2007. “[This] study provides growing evidence that [the] U.S. is underestimating the prevalence of autism spectrum disorder,” said Michael Rosanoff, associate director of public health research and scientific review at the non-profit Autism Speaks. Rosanoff did not work on the new report, but he had reviewed it. The new figures came from the 2011 to 2012 National Survey of Children’s Health, a national telephone survey conducted by the CDC. In this most recent survey, parents reported that two percent of six - 17-year-olds had a diagnosis for an autism spectrum disorder, which is higher than the 2007 estimate of 1.16 percent. Overall, the increase was greater for boys than for girls, and among 14- to 17-year-olds than in younger children. The report’s authors largely attribute the change to doctors identifying the disorder more often now than they did just a few years earlier. “Much of the prevalence increase from 2007 to 2011 [to] 2012 for school-aged children was the result of diagnoses of children with previously unrecognized ASD,” they wrote. Last year, the CDC revised its go-to estimate of the prevalence of autism in the U.S., saying it now affects 1 in 88 children, up from 1 in 150 in 2002. That is the estimate most widely used by health care providers, public health officials and media outlets when quantifying the prevalence of autism in the U.S., and came from the CDC’s Autism and Developmental Disabilities Monitoring Network, which collected data from health and special education records of eight-year-olds living in 14 communities across the country in 2008. Because the two estimates used different approaches to identify cases, they are not directly comparable, but Rosanoff believes the new parental-report data suggests that “1 in 88” figure is low. Getting a clearer picture of autism’s true prevalence will help researchers set a benchmark that allows them to better understand if the disorder is simply being identified more by doctors; if actual risk has increased – or both T h e A C D D A d v o cat e
For those on the autism spectrum—
continues to work for treatment and insurance reform
would establish a regulatory board for behavior analyst professionals in Alabama. Coming on the heels of the Riley Ward Act which was signed into law last session, this bill will make it easier for ABA therapy to be offered to those on the Autism Spectrum in Alabama.” In last year’s session, “This legislative session offers a lot of opportunities for the Ward sponsored and autism community in Alabama,” Ward said. “One bill being passed The Alabama Riley considered by the Legislature would establish a regulatory Ward Autism Insurance board for behavior analyst professionals in Alabama. Coming Reform Act of 2012. Ward’s daughter Riley, who is on on the heels of the Riley Ward Act which was signed into law the autism spectrum, gave last session, this bill will make it easier for ABA therapy to be the act its name. Accordoffered to those on the Autism Spectrum in Alabama.” ing to the Autism Society of Alabama, the bill “includes an offering by private insurers in Alabama analyst (ABA) professionals in Alabama. “This legislative session offers a lot of opportuni- to offer employers the opportunity to purchase coverage for employees’ family members’ ASD ties for the autism community in Alabama,” Ward therapies including ABA therapy. The offering by said. “One bill being considered by the Legislature s he did last year, Alabama State Senator Cam Ward (R-Alabaster) has introduced a bill to address the broad topic of autism treatment and reform. His latest effort seeks to establish a regulatory board for applied behavior
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private insurers includes coverage of Applied Behavior Analysis Behavior Therapy up to an annual maximum benefit cost of $36,000 per year for a child nine years old and younger who has been diagnosed with ASD. The legislation coincided with a Blue Cross and Blue Shield decision to triple the amount of Speech and Occupational Therapies covered for children with Autism Spectrum Disorder (ASD) for families covered by underwritten or state regulated insurance policies.” Applied Behavior Analysis is defined as “a scientifically validated approach to understanding behavior and how it is affected by the environment.” (The ACDD Advocate provided a thorough examination of behavior analysis in an actual autism treatment environment in its Winter 2012 issue. This and other back issues are available at www.acdd. org.) Last year’s bill was heartily endorsed by the Autism Society of Alabama. But not everyone was pleased with the Riley Ward Act’s final impact. According to a press release from Autism Speaks, the country’s largest autism advocacy organization, the bill fell short of meaningful reform. “The problem with this new proposal is that it doesn’t require coverage but requires only that insurers ‘offer’ the benefit, meaning the cost will not be spread over the entire insurance pool.
Under the new proposal, which was crafted by the insurance industry, Alabama families are not guaranteed anything.”But Ward said it was a step in the right direction. “While the bill was not perfect, it is another step down the road to providing adequate insurance coverage to those on the autism spectrum,” Ward said. “This bill will give employers the opportunity to offer insurance cover-
Ward’s bill is not the only one in the current legislative session that addresses autism awareness. “Another measure making its way through the legislative process is a bill that will allow individuals who have an autism diagnosis to have their diagnosis listed on their driver’s license should they so wish,” Ward said. “This bill, sponsored by Senator Arthur Orr, will make sure that public safety officials
“Another measure making its way through the legislative process is a bill that will allow individuals who have an autism diagnosis to have their diagnosis listed on their driver’s license should they so wish,” Ward said. “This bill, sponsored by Senator Arthur Orr, will make sure that public safety officials are aware of an individual’s diagnosis should they encounter someone on the spectrum during their line of work. This will be a public safety benefit for many on the spectrum. These two bills are coming up for votes at a time when the nation celebrates Autism Awareness Month.“
age for their employees that is unprecedented in Alabama today.” Ward said his new bill will add to the progress achieved through last year’s legislative success. “In addition to increasing the availability of services, this new bill will also make it easier for insurance providers to cover these ABA therapies that so many people in our state need.”
are aware of an individual’s diagnosis should they encounter someone on the spectrum during their line of work. This will be a public safety benefit for many on the spectrum. These two bills are coming up for votes at a time when the nation celebrates Autism Awareness Month. I cannot think of a better time to bring attention to these two important bills.”
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Part of Alabama’s Universal Design revolution—
implements Assistive Technology in residential settings
evin Braswell was born in Birmingham and grew up Mobile. As a student at Auburn University, he developed into a self-described “techie guy.” He began his professional career in Information Technology at Accenture, where he developed software. “As do many people, I reached a point in my career where I decided I wanted to work on my own. I also wanted to continue to use my technology skills,” Braswell said. “I became interested in smart home technology where you can control various systems, such as
lighting, security, and HVAC from a touch pad or panel.” As a child, Braswell had a stroke and spent time in rehabilitation since he experienced moderate paralysis. Of course, back then there were no Assistive Technology devices on the market. After suffering a second stroke a few years ago, Braswell was able to take a renewed look at smart home technology. “At this point, I took a step back and thought that maybe I could re-purpose some of the smart home equipment in my house,” he said. “At heart I was still a techie guy, but I
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also knew deep down that a lot of people could benefit from this technology. So now I customize equipment to meet various Assistive Technology needs. It is a great fit for me. I have sort of been in the shoes of people with various disabilities so I know how much freedom can be won through the often-simple applications of Assistive Technology. From there, Smart Care was born.” Auburn resident Eric Peebles is one of many people who have benefitted from Braswell’s innovative Smart Care designs. (See sidebar on Peebles in this issue.) “The iPhone is Eric’s ‘go-to’ device so we first fashioned a mount that positioned his iPhone on his power chair so that Eric could easily use it. The iPhone runs an application, software that controls his environment. We have installed eight lights, a programmable thermostat, and a motorized door lock that interfaces with his automatic door opener. For example, when Eric is ready to leave his home for the day, he can push a button on his iPhone that is programmed for ‘GOODBYE.’ The system will then unlock the deadbolt, open his door, set the thermostat to the desired level, turn off the lights and the television. Once Eric is outside, the system automatically closes and locks his door. With Smart Care, we can build unlimited automated programs. For instance, Eric was worried about high utility bills because he has had caregivers leave the window open with the air conditioning on. We programmed Eric’s Smart Care system so that if a window or door is open for a certain period of time, the system will turn off the HVAC. The Smart Care system has greatly reduced Eric’s power bill. The possibilities are endless.” Braswell has integrated Eric’s Smart Care system with his television and DVD player so that he can also control that equipment with his iPhone. “Standard remote controls can be challenging for someone with a disability because they require line of
sight. For instance, it can be difficult for someone in a power chair to point a remote directly at a television. Smart Care, however, does not require line of sight. Instead, it uses a home network and infrared emitters so that the television (or any AV equipment) can
“The iPhone is Eric’s ‘go-to’ device so we first fashioned a mount that would hold his iPhone on his power chair and make it accessible by his remote. The phone runs an application, which is software that can control his home environment. We have wired seven or eight lights, a thermostat control, automated door locks, and interfaced the app with his door opener. For example, if Eric is ready to go and leave for the day, he can run the app on his iPhone that is programmed for ‘GOODBYE.’ This app will then unlock the deadbolts, set the thermostat, and turn off the lights and the television.” be controlled from any room in the house. With Smart Care, a person can also turn off the den television from
the bedroom using a GOODNIGHT or ALL OFF command. With that same command, the system can also be programmed to turn off the lights, adjust the thermostat, or lock the doors. We can also add cameras so that when the doorbell rings, the person at the front door can be viewed. What we did in Eric’s case was to customize Smart Care to meet Eric’s specific goals. That is what AT is all about.” Braswell recently received an ACDD grant to promote awareness of AT and Universal Design in Alabama. The grant has two components: Universal Design and Smart Home technology. “A central goal is to create awareness through an educational campaign. The grant will allow us to unite stakeholders such as Independent Living Resource Centers and other organizations that focus on assisting people with disabilities with members of the Alabama housing industry, to promote the benefits of UD and AT. The ultimate goal of educating our landlords and homebuilders is to produce housing units for people with disabilities. The coalition could create a housing certification that meets certain criteria like LEED (Leadership in Energy and Environmental Design), which is a voluntary, consensus-based, market-driven program that provides third-party verification of green buildings.” “We want to establish guidelines like LEED for accessible and smart homes. This type of certification should lead to a ‘stamp of approval’ so that someone with a disability could easily search for a home or apartment that meets their needs. We hope to develop a search term in Multiple Listing Service (“MLS”) and, of course, we want to leverage the Council’s excellent ALHousingSearch.org program.” “With universal design and smart home technology, independent living for people with disabilities is definitely achievable. At Smart Solutions, our motto is simple: Smart Homes, Smarter Living.”
T h e A C D D A d v o cat e
Eric Peebles is living proof—
Smart Home Technology provides quality of life, cost controls
ric Peebles is a believer in Smart Home technology. Peebles, who has severe disabilities to go
the smart home provides, there may be other advantages to the emerging technology.
“Smart home technology in general is good for people with significant disabilities like myself because it leads to greater independence,” Peebles said. “As a result of the innovations we made in my home, I am now without a caregiver for four to six hours a day because I can use the technology to control much of my own environment. Just to be able to go outside and turn the lights on and off by myself is a major sea change in my home environment.” along with a resilient spirit, recently worked with Kevin Braswell and Smart Care to upgrade his Auburn condominium with smart home technology. “Smart home technology in general is good for people with significant disabilities like myself because it leads to greater independence,” Peebles said. “As a result of the innovations we made in my home, I am now without a caregiver for four to six hours a day because I can use the technology to control much of my own environment. Just to be able to go outside and turn the lights on and off by myself is a major sea change in my home environment.” Peebles said that in addition to the greater freedom and independence
“From a policy perspective, I think that in the long run this could save
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healthcare programs a lot of money,” he said. “I had known Kevin as a vendor from our AlaTec conference and we began talking. The young kids who work for me might sometime leave a window open and run up my power bill, something like that. So there are simple, practical reasons for this. But we agreed that we should try to turn this into more than just installing a door opener. I knew this would have a large up-front expense, but I am willing to take that risk because my theory is all about providing a positive model for people with disabilities. If this could help people stay in the environment of
their choice for longer than it otherwise might, this is good. This is a game changer.” Peebles said most programs for people with disabilities across the country allow the integration of IT into the market and home. He wants to see more of that. “If we can get the medical community to buy into this and help support people with disabilities to front that one-time cost, it may very well pay for itself in the long run. Once the technology is in place, it’s there to stay. The expense goes away and the supports remain in place. Fewer caregiver hours will add up over the years. And this isn’t just for people with disabilities. This kind of technology could also help people to age in place. It impproves quality of life for many different populations.” Peebles experiences that quality every day. “When Kevin and I had most of the program in place and he was preparing to come back the next week and fine-tune everything, I sent him a text. I had opened up my door, gone out onto my porch, and read the morning newspaper on my iPhone all by myself. Little things like that matter. It’s about quality of life.”
“If we can get the medical community to buy into this and help support people with disabilities to front that one-time cost, it may very well pay for itself in the long run. Once the technology is in place, it’s there to stay. The expense goes away and the supports remain in place. Fewer caregiver hours will add up over the years. And this isn’t just for people with disabilities. This kind of technology could also help people to age in place. It impproves quality of life for many different populations.”
T h e A C D D A d v o cat e
Using the Huntsville area as an example—
Housing market evolves with aging population By John Allen
John Allen, president of Southern Construction & Design, Inc.
he future of the housing market, both in new construction and in the remodeling industry, is
These features must be considered by builders and developers, especially as the Baby Boomer generation begins to impact this market segment with a desire for these features. It may come as no surprise that Baby Boomers have found the Huntsville area an attractive place to live, but it appears they are also finding it a good place to retire. Boomers are a substantial segment of the area market, and they are continuing to reinvest in older subdivisions where they raised their children and further contributing to the area growth. The Huntsville job market often provides the connection, bringing many Boomers to the area, and some retirees from the military. Many who worked at the Arsenal, but relocated, often return and others locate here to follow children employed in the area’s strong technology industry, or just to be closer to grandchildren. Knowing that the process of aging
Knowing that the process of aging is continual, and that the cost of longterm care is staggering, many cost effective options exist that can be implemented into new construction or a remodeling project that will allow aging in place. Specifically, with average costs of long-term care in the average range of $5000-$7500 per month, a return on investment can be calculated rather easily to answer the question of implementing these features up front in the building process. moving toward a focus on universal design and aging in place. The concept of “universal design” is the adaptation of a house design to existing and future physical needs so the owners can live there as long as possible. Another term used with universal design, is “aging in place.”
is continual, and that the cost of longterm care is staggering, many cost effective options exist that can be implemented into new construction or a remodeling project that will allow aging in place. Specifically, with average costs of long-term care in the average range of $5000-$7500 per month, a return on investment can be calculated rather
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easily to answer the question of implementing these features up front in the building process. Typical features include light automation, in-house audio and video, accessible cabinetry and bathrooms, accessible entry points, hard surface floor systems, in-house vacuums, and even appliance selections. If a person opts to “age in place” by remodeling his or her house instead of new construction, popular options include creating accessible bathrooms and kitchens, and adding an accessible master bedroom/bath on the main level. All of these options should be investigated with an eye on the budget and an eye on the future. Many people are also making their homes more energy efficient as the cost of energy continues to rise as another often-overlooked aging in place feature. Many do understand the correlation between the opportunities that green building yield the consumer in energy and resource efficiency in a residence. They know that green building is an investment up front and does cost additional money, but the payout over the long term is acceptable for that investment. Options such as energy efficient HVAC systems, superior insulation systems, and energy efficient water heating and lighting all contribute significantly to a lower utility bill in the future. Currently, there are many universal design features in existing choices that can be made in the marketplace today. For instance, the simple choice of lever handle sets versus round or oblong handle sets is an easy choice for accessibility. Other choices exist in lighting fixture selections as well as lighting
New Building Technologies Plumbing Sensor operated plumbing faucets Hands-Free Devices
Side mounted motion sensing flush operators
New Building Technologies locations. Areas such as countertops in the kitchen and laundry need to be targeted with specific task lighting with under-cabinet lighting fixtures or spot lighting. The proliferation of touchless bath and kitchen plumbing fixtures is a great example of off-the-shelf technology available that can immediately bring levels of universal design into any project new or remodel. The National Association of Home Builders has an educational designation available for professionals in the industry. This is the Certified Aging in Place (CAPS) designation and is a three-day training course in aging in place and universal design implementation. Local experts that have achieved this designation can be found atÂ www.nahb.orgÂ or by calling the Huntsville Madison County Builders Association at 256-533-2602. These professionals can assist you from design to selection of features for your next home project.
Appliances/Cabinetry Front Mounted Controls Range Top, Induction Surface Drawer Microwave
John Allen, president of Southern Construction & Design, Inc., has been building custom homes and providing remodeling services to the Huntsville/Madison County area for over 15 years. SCD has been awarded 13 statewide awards in the Alabama Remodeling Excellence Awards program, and in April of 2011, won the National Universal Design Accessibility Award from United Cerebral Palsy. In August of 2011, SCD received the Building/ Construction/Development Award from the Tennessee Valley Green U Festival. Mr. Allen is an Alabama licensed residential homebuilder, a Graduate Master Builder (GMB), Certified Graduate Remodeler (C.G.R.), a Certified Aging in Place Specialist (C.A.P.S.), Certified Green Professional (C.G.P.), and NAHB National Green Building Verifier. He is also a licensed professional engineer (P.E.) in the State of Alabama. T h e A C D D A d v o cat e
New Building Technologies (Continued)
Upper Cabinet adjustable height technology Accessible Storage Video Surveillance Infrared, 0 lux, DVR recordable, Internet accessible, Stream to mobile devices, iPhone, iPad, etc.
• Manifold Plumbing Systems • PEX Piping - ‘Freeze’ Walk In Tub/Shower
Proof • Instant Fixture Water Control • Flush Mount Exterior Faucets
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Goal is Universal Design and service to others—
Veterans, students collaborate,
develop customized assistive-technology By Dr. Doris Hill
ssistive technology (AT) is defined as “any item or piece of equipment or product system acquired commercially, off the shelf, modified, or customized, and used to increase, maintain, or improve functional capability for an individual with disabilities” that enhance an individual’s ability to perform everyday life activities. Unfortunately, AT devices are not always designed and developed using an individualized, holistic, psychosocial approach. For the past four years, the Department of Special Education, Rehabilitation, & Counseling’s Center for Disability Research and Service at Auburn University has collaborated with the Department of Industrial and Graphic Design to generate conceptual solutions to the needs of those with disabilities in the areas of employment, education, independent living, recreation, and transportation.
These efforts meet the needs of the individual with a disability by providing a collaborative interface between researcher, rehabilitation student, designer, and the person with a disability. The participants in this year’s unique collaboration are United States military veterans with disabilities. The products generated this year are funded through the Auburn University Intramural Grant Program (AUIGP), enabling many of the concepts to be brought to completion. Participants were recruited through various organizations, such as
the Army Wounded Warrior program, Veteran’s Affairs Prosthetics Unit, and the Warm Spring Rehabilitation Center. Six participants were screened based on disability, challenges and opportunities for new AT. Participant’s military service ranged from two to over 21 years. All participants made it clear that they are motivated to provide service to other veterans through their participation in the project. T h e A C D D A d v o cat e
Identifying the Challenges At the start of the project, under the supervision of faculty members Jerrod Windham, Scott Renner and Doris Hill, each group identified three specific challenges (opportunities) to address. The teams met again two weeks later to address these challenges and present possible solutions. Following are some of the ideas and products that were earmarked for prototype development. 1. Earl Daniels is an Army veteran with 21 years of military service, lost his right leg below the knee in a motorcycle accident and has been using a prosthetic for three years. Earl still serves his country as a civilian Army Traffic Safety Program instructor. Challenges for Earl included limited range of mobility in the prosthetic, which restricts his proper motorcycle riding position. In addition, when he is in the riding position on the motorcycle, the back of the prosthetic will pinch his leg, cutting off circulation and pinching the skin. 2. Andrew Wiessenberger is an Army veteran who served as a combat engineer and medic, and had been qualified as a combat lifesaver. His deployments included service during the Gulf War, Afghanistan, and three tours in Iraq. He was involved in six IED explosions during his tours and is a wheelchair user with injuries to his spine and legs as well as a traumatic brain injury. He expressed a desire to start a non-profit for veterans living alone. Andrew would benefit from a stand-up assist, and believes this type of device would help others with limited strength move to a standing position independently. He also noted that the control panel for the chair obstructs his ability to navigate since it sticks out, limiting his ability to get close to a desk, and requires him to pull the stick all the way back, which is uncom-
fortable. Andrew enjoys fishing, hunting, and shopping, but his chair has no frame, basket, or bag for transporting items. He would like a universal carrier that could be folded and put away when not in use to save space. 3. Henry Harris, also known as “Sonny,” is a Vietnam veteran who uses a below-the-knee prosthetic as well as a wheelchair to navigate through his daily life since losing his leg. He experiences balance issues, but says he “keeps trying” so that he won’t lose his other leg. He said he would like a lighter temporary leg to get around for short periods of time at home. While in his chair, Henry often has difficulty reaching items, plugging and unplugging electrical cords, getting mail from the mailbox, and picking up dropped items. He has difficulty navigating hills with his current chair. He admits the chair he uses is a less expensive version, but would like AT to make up for some of the more expensive features included in other chairs. 4. Marshall Nelson, also known as “Mac,” is a Vietnam veteran who stepped on a land mine in 1967, resulting in the loss of his left leg below the knee. He since graduated from Auburn and retired from US Department of Agriculture. He has used a prosthetic for 40 years. He likes to fish and hunt, and will often carry heavy items, with a resulting sore knee at the base of the prosthetic. He uses a “regular” hotel room when he travels, but said a portable accessible travel bar would help him navigate the shower when traveling. 5. Robert Strapp is a Navy veteran. His right leg was amputated seven years ago and he uses a prosthetic as well as a wheelchair. He is 6’2” inches tall and finds most crutches do not support his large frame when navigating on his prosthetic
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leg. He would like a customized crutch-like device for balance so that he can have his hands free for other activities (e.g., making a sandwich, getting something out of a cabinet). 6. Jesse Upshaw is a 70-year-old Vietnam-era veteran with a career of public service. He has a degenerative Inclusive Body Myositis (IBM) often diagnosed as ALS when first acquired. The National Institute of Health is currently conducting a study to determine whether this disease is higher in military populations. Because of the degenerative nature of the disease, supports for Jesse at various stages would be beneficial. He needs the ability to access his own technology and be able to utilize personal items and electronic devices for daily living.
Prototype Development Equipment for this part of the process included visual concept drawings and research of the existing market before the move toward prototype development. For some individuals, the process of finding existing AT and learning how to use existing technology became as important as developing something new. Between the first and second meeting, three to four hours were spent teaching several veterans how to access and use existing voice recognition software and tools currently available to increase independence. Two weeks after the initial meeting, the six collaboration teams met to present, discuss, and narrow down potential AT devices for further development. Projected development timelines were considered in the selection process, with less expensive, short timeline items given weighted consideration, due to funding constraints and the desire to provide the AT device at the end of the project. Other ideas were identified to pursue beyond the collaboration
Equipment for this part of the process included visual concept drawings and research of the existing market before the move toward prototype development. For some individuals, the process of finding existing AT and learning how to use existing technology became as important as developing something new. Between the first and second meeting, three to four hours were spent teaching several veterans how to access and use existing voice recognition software and tools currently available to increase independence. studio time frame of five months, with continued input from the veterans. 1. Earl. For Earl Daniels, consideration of his use of a motorcycle drove the innovations of this team. The team focused on addressing the socket for the prosthetic and attachment to the residual limb as well as redesign of the foot peg for the motorcycle. A prototype inflatable sleeve and flexible edge for the back of the prosthetic were developed for the mid-project presentations. Earl donated extra prosthetic parts to the project in order to assist the research project and to help other veterans.
1. Andrew. The team focused on an assist to move from the chair to a standing position. They then looked at a lever attachment for the footrest, since Andrew found kicking up the footrest annoying and inefficient, as it would often fall back down and create a safety risk as he attempted to stand. He also found that the control panel would get in the way when he tried to maneuver under a table. The team looked at adapting the holder for the control panel so that he could stow it to the side when maneuvering under a table. A prototype lap tray was also developed and tested by Andrew. He indicated that the device would work well and suggested a few refinements such as a leveling “leg” to rest on his exiting wheelchair arm to stabilize and level the writing surface. 1. Sonny. Henry “Sonny” Harris and his team identified bathroom assist bars, and several versions of wall plug adapters to assist in removing plugs from the wall. During the prototype phase, several “grip” attachments were tested. The VelcroTM company donated some fireproof Velcro strips for use in prototype development, enhancing the collaborative nature of the project. 1. Mac. For Marshall “Mac” Nelson, the focus was on hunting and leisure time. These included an all terrain cart or carrier for hunting. They also were interested in a portable grab bar for traveling since Mac does not request accessible accommodations when traveling. Prototypes for Mac focused on a moveable portable transfer tub attachment to facilitate movement from floor to inside the tub. Input from other veterans present included making the final product more universal so that those with ability to rest their weight
on the residual limb could do so, while those who needed to sit and transfer could use the device as well. Incorporating universal features and thoughts regarding the balance and motor issues of aging individuals was inherent in the design process. 1. Robert. Challenges included those encountered by the veteran, as well as those encountered by his spouse as she assisted him in his daily routine. For Robert, a walker without wheels that was high enough to provide stability without leaning over was an important goal. Another idea involved a backpack carrier device to carry his lightweight but cumbersome walker, which often made it difficult to push the wheelchair while carrying. The bottom of a fourprong aluminum cane was adapted to a set of existing crutches to construct a “hybrid” device to enhance balance and stability as well as increase the height of the final device. 1. Jesse. Mr. Upshaw often spends some time alone in his house during the day, with some of that time spent in his bed. The team looked at AT to provide choices while in bed, by developing a device with a pinching mouth stick to operate his electronic devices. AT faculty also spent time with Jesse outside the collaboration studio to familiarize him with existing devices that could serve as AT as his needs changed. AT prototypes for the mid-collaboration presentations included a switch activated by the wheels of his chair, as well as quick release mouth sticks and a docking device for various mouth stick attachments.
T h e A C D D A d v o cat e
28 A l a b a m a C o u n c i l 0 n D e v e l o p m e n t a l D i s a b i l i t i e s
Impact of the AT Collaboration Model Participants included spouses and caregivers, which was a new addition to the collaboration model. All participants were actively involved in the discussion from the first introduction to their university team of rehabilitation and industrial design students. The focus and perspective of the participants and student veterans was a little different than past sessions. These participants, while open about the nature and scope of their disability and of their service to nation, were quick to state that they wanted to help other veterans and found that to be a critically important part of their participation.
If they personally gained from the collaboration that would be great, but just as important was that it might help other veterans. They valued that idea highly, in the spirit of service to others and the training they received while serving their country. The idea of making a difference through participation in this “living laboratory” and continuing a tradition of service to others was a strong theme. All participants thought about how to make the devices applicable to other populations of veterans through universal design. With the number of veterans with disabilities growing exponentially, and reductions in force pending, innovative programs to support veterans as they transition from the military, including
those new to their disabilities, is important work. In this model, the veteran is an integral part of the research and design process. The interaction with students and communication with other veterans greatly enhanced the project. The value and importance of the collaborative effort is worthwhile not only from a technology standpoint but because it is in keeping in the tradition of teamwork central to military training. This collaboration effort is also in keeping with the tradition of “Mission First, People Always,” and these veterans and their student teams lived this ethos through the entire AT Design process.
The following organizations and people gave their commitment and support to the research project and deserve acknowledgement.
Joellen Sefton- Auburn University Department of Kinesiology
Michael Oviedo, prosthetist, Central Alabama Veteran’s Healthcare System,
Jackie Collins (works with Mike Oviedo in CAVHS)
LTC Veronica Kouassi, Warrior Transition Battalion Commander
CSM Thomas LaGare, Warrior Transition Battalion Command Sergeant Major
Hakim Muhammad, Alabama Wounded Warrior Coordinator
The project teams dedicated time and knowledge to the project. Their energy and attitude made the project a success.
Group and Participant Group 1
Industrial Design Students
Jonathan Dunn Ryan Freeman
Brian Dailey Ryan Marcoupolos
Tianyu Cui Christopher Williams Marcus Crawford
Zhe Mei Ying Su
Nathan Kinney Kai Selvon
Alex Szczepaniak Patrick West
Emmie Mayne Hailong Piao
Henry Harris Marshall Nelson Jesse Upshaw Robert Strapp
T h e A C D D A d v o cat e
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